The group leading this initiative, in consultation with others, comprises Caroline Kingdon and Adam Lowe (both of whom served on the NICE Guideline Committee); Leonard Jason, an experienced ME/CFS researcher from de Paul University in the US.
The group highlights that for decades, research into Myalgic Encephalomyelitis (ME), sometimes called ME/CFS, has been hampered by heterogeneous diagnostic criteria and the inclusion of participants who may not actually have ME.
Clinical definitions for ME/CFS have been adopted in many countries, but there is still no consensus around research criteria.
To improve the quality of research a group of individuals—including researchers and people with lived experience of ME/CFS—has created a consensus statement, which has already been signed by researchers, clinicians and representatives of advocacy groups around the world.
The next important step is to demonstrate support from people with ME and their carers.
Read the document and add your signature via the Google form below